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JIA VIP Panel: Information for researchers

The JIA VIP Research Panel is a unique opportunity for you to access a group of JIA families who have already expressed an interest in taking part in research, as well as a network of people who want to support effective PPIE (Patient and Public Involvement and Engagement) activities.

The two main arms of the JIA VIP Panel are:

Direct research – through surveys and questionnaires (either one-off or longitudinal studies). Contact us early in your research project planning to see how we can support your project and provide access to the participants of the JIA VIP Panel.
PPIE activities – through focus groups, reviewing documents, taking part in research meetings, steering groups, presentations and more. Contact us and we can link you with interested families who can help with your PPIE work. Remember that the earlier you contact us, the more successful and effective PPIE work can be.

To work with Juvenile Arthritis Research and the JIA VIP Panel, get in touch.

Some of the benefits of using the JIA VIP Panel include:

Pool of engaged and interested participants

Recruiting families to take part in research can be difficult, particularly given the large number of surveys circulated in recent years. A number of studies in the past few years have been poorly designed, with no benefit to the research or patient community - surveys asking questions that parents cannot answer; surveys with spelling mistakes and routing errors; surveys that made no sense; data collection tools under the guise of research that were actually designed to elicit donations and mailing list subscriptions. This plethora of poor quality surveys has a significant negative impact on patients and parents, wasting their valuable time and effort with no new scientific knowledge contributed to the global research community.

The JIA VIP Panel changes that. We have a pool of people who are already interested in taking part and already engaged in the process. By sharing surveys through us, you are able to access their experiences and knowledge, in a more sustainable, effective and meaningful way.

Faster turnaround of surveys

The JIA VIP Panel is part of Juvenile Arthritis Research. We take on the administrative processes for you, and use internal quality checks and approval processes. By choosing to work with us, your survey will reach participants more quickly than opting to share through other routes. Analysis has shown that we have the most engaged network of JIA families in the UK, and the JIA VIP Panel is the most effective way of working with them to conduct research studies.

Access to people who are already interested in PPIE

There is growing recognition that patients and families have a lot to offer to the entire research process through effective Patient and Public Involvement and Engagement activities (PPIE). The JIA VIP Panel is an ideal place for you to recruit PPIE participants for your project to ensure representation. We believe that PPIE activities should be fully reimbursed at NIHR rates, to reflect the time take by participants and to remove barriers to taking part. Our JIA VIP Panel is a group of people who want to support a range of research activities.

More complete dataset

Long surveys can put people off from taking part. When different researchers are conducting surveys at the same time, respondents often get asked the same demographic questions every single time. That leads to respondents dropping out of surveys, leaving you with an incomplete dataset. With the JIA VIP Panel we have already collected the demographic information for every participant, which both reduces the burden on respondents and ensures you have a more complete dataset as a result.

Improvement of research questions and outputs

Overall, the JIA VIP Panel helps improve the research questions that families with JIA are asked, and improves the research outputs. Low quality surveys will not be sent to the Panel. Only high-quality research with valuable aims is supported by the Panel. Whilst Juvenile Arthritis Research do support students and young researchers in addition to working with experienced academic, clinical and industry researchers, we will work to ensure every survey shared to the Panel delivers meaningful benefit to families.

There are also benefits to families, including reducing the burden on them as they take part in research, knowing their data will only be used appropriately, access to a range of opportunities that may previously have been limited to a few participants, and being rewarded for their time. Overall, the JIA VIP Panel will help improve the quality of research that takes place.

Frequently asked questions

As a researcher or healthcare professional, can I join the JIA VIP Panel myself?

At present we are recruiting families of children and young people with JIA and adults with JIA in the UK. However, we are building a list of researchers and clinicians who may also want to be part of their own separate JIA Panels, which will include rewards and benefits and give you a vital opportunity to take part in research and share your views and experiences anonymously as a health professional. Please complete this short form to register your interest and we will contact you as soon as that service is live.

How can I signpost families to the JIA VIP Panel?

Families can sign up at www.jarproject.org/vip - ask them to follow the link for families.

How does the JIA VIP Panel work for researchers?

Working with the Juvenile Arthritis Research JIA VIP Panel is easy:

Contact us and let us know you’d like to work with our JIA VIP Panel.
We will ask you to complete a short form that sets out what you need from the JIA VIP Panel, timescales, aims and so on. We will then review that form internally. We may ask to meet with you to discuss the project. The earlier you involve us, the better.
We will work with you to develop the plans and activities. We will each sign a confidentiality and data sharing agreement. Once finalised, we will send the survey or PPIE sign-up form to our JIA VIP Panel.
Once the survey and/or sign-up period closes we will link the responses to the demographic data we already hold, anonymise the dataset, and provide it (or the results) to you in a secure manner.
There is a charge for accessing the JIA VIP Panel, which helps secure the future of the group. Juvenile Arthritis Research is a charity and any income from the panel helps protect and deliver future services to families affected by JIA. We will discuss costs and funding with you when you get in touch. Please note that we may be able provide pro bono and reduced-fee services in certain circumstances at our absolute discretion, but the underlying quality and value of the research must still reach our standards.

Why should focus group members be paid?

Patients and parents are vital to ongoing research into JIA. Everyone else involved in a research project is paid to be there, and we believe it is important that patient representatives are also reimbursed for their time. We know this makes being part of a research project accessible, and recognises that their participation really does matter. We have been advocating for properly funded patient involvement work since we were founded as a charity, and the JIA VIP Panel is one way we can make sure it happens.

What about other surveys and research?

One of the benefits of the JIA VIP Panel is that we can help maintain high-quality research standards. There may be other research projects that take place, which we cannot be certain of the quality or the value of the project. If families wish to take part in them, they may do so but please note that neither participants nor researchers would get the benefits that they would had it been part of the JIA VIP Panel.

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